What I want you to know about parenting a child with schizophrenia

What I Want You to Know is a seriesof reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Anonymous.

My daughter seems like an average child for the first few minutes you meet her. Then you can see that something is different. Maybe it’s the way she talks about her three favorite topics without remembering that she’s told the stories several times before. Maybe it’s the way that she stares at people too long, without realizing that people notice those things or it makes them uncomfortable.

Always a highly-emotional child, my daughter went from a typical pre-teen to full-blown depressed pre-teen, with us (her two parents and two step-parents) furiously trying to keep up, trying to explain her behavior and her outbursts to her teachers and peers and family. We assumed it was depression, then borderline personality disorder. We threw medication at it, only to see her continually decline with her inability to maintain relationships and continual issues with kids and their cruelty toward her.

We thought they were cruel with their words and actions. We couldn’t believe how awful teens were, so we switched her school. And then we switched again, because, you know, kids are mean. We never considered the idea that she was hearing things that weren’t actually being said. We never considered the idea that she was seeing things. We never considered we’d actually hear “schizophrenia.” Not my kid, right? She’s too young. It’s got to be something else. Right?

What I want you to know is that it’s six years since the decline began and we’re still fighting. She’s still fighting. Seven hospital stays and up to 16 pills (six prescriptions) and residential treatment and day treatment. Guardianship and now an assessment for residential community services. She’s trying. She’s trying to remember if she told you that story already. She’s trying to dress like everyone else, but isn’t aware if the clothes she is wearing are clean or not. And if they aren’t, she doesn’t really care.

She’s trying to use her skills from years of therapy and dialectical behavioral therapy. She’s trying to remember that people aren’t conspiring against her. We’re trying to be patient and offer social cues to help her fit in, even though the repetition doesn’t seem to be working.

We don’t discuss it publicly because of the connotation between violence and schizophrenia. I hold my breath whenever there is a mass shooting, terrified they identify the shooter as “schizophrenic.”

I want you to know that I don’t really know what caused it. I know it lurks in my family DNA, I know it’s connected to epilepsy (which she had as a child), I know people are born with it. But I want you to know I still feel responsible.

I want you to know that I don’t know what her future holds, but that she has so much to offer. She has a story to tell, but I want you to know that I’m terrified this illness will ravage her brain and she won’t remember what she wants to say.